I’m sorry it’s been a while since my last entry.

It has been a busy few months…the holidays and birthdays…but mostly April.

April was a difficult month for us. That is the month Caroline was born and the month that she died. She was born on the 18th and she died on the 4th (4-4-14)…two weeks shy of her second birthday.  We weren’t sure how we would manage to get through April. I still can’t believe it’s been a whole year since she died.  I miss her every day.

By the grace of the world we managed to survive through this year…and are actually do well.  Shocking I know.

I think one of the main reasons we have done well was because of the agreement we made when we found out Caroline had a genetic condition. My husband and I agreed to always be honest with each other and open with each other about how we are feeling and concerns we are having. Based on our strong foundation of a relationship with this agreement, we have managed to survive and flourish in our new environment.

The other main reason we didn’t completely give up and crawl under a rock (or beer bottle) was because of our son.  We chose to get pregnant pretty quickly after we had Caroline…I think we were both concerned that if we didn’t have another child right away, we wouldn’t want to after Caroline passed…we didn’t want to feel like we were replacing her.  I was pregnant with Jimmy before her first birthday.  He was born in December in the cold tundra.  We had 4 wonderful months together with both of our children.

It feels like it is time to put this in writing…….Caroline had been getting progressively worse…getting sick more frequently and requiring more meds, steroids, etc to improve her quality of life.  The last time she got sick, she got sick fast.  She was ok one day and then on April 3rd I woke up at 4 am hearing her struggling to breathe.  Steve woke up at 5 am with me in tears trying to draw up the morphine but not being able to see through the tears in my eyes.  He helped me…we got her medication (morphine, steroids, antibiotics) and gave her a bunch of breathing treatments, atropine drops, and suctioning and she improved some.  He called out of work.  I texted my hospice RN (we made an apt for the following day at 1 pm). Once she was able to relax and breathe, she was able to rest.  It seemed like she was going to turn around..like she always had.  We even went out to lunch. But then she got worse again later that day.  I slept next to her bed.  We got up at 3 or 4 am again on April 4th. We tried to improve her breathing again, but it didn’t work.  I texted the hospice RN and said that I didn’t think she was going to make it to the appointment.  We gave her morphine and ativan and held her.

The hospice RN came and managed all the horrible aspects of death and dying…calling the funeral home, etc.  We just sat and cuddled together and told her how much she was loved.  She died peacefully in our arms that afternoon.

We have some friends in the cold tundra and I had texted them April 3 that Caroline was sick.  They texted to check in on April 4…I told them that she had died.  They came over with food and wine.  One friend drove over, left food and beer at the door, then texted that she had done that so we would have privacy.  I regularly got food packages at the door, both from my friends in Minnie and my family and friends from all over who mailed us food, cookies (Lori XO), beer, flowers, cards.  We love you and we appreciate you and if I didn’t thank you then, I want to say thank you now 🙂

Steve and I remember some of the next months and some we have mentally blocked I think.  We were going through the motions for a very long time.  We moved out of the cold tundra to the sunshine state. My husband started a new job and we have met some great people and have developed some wonderful friendships.

I promise it won’t be so long until my next entry.

Until next time….